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Wednesday, April 2, 2014

The Keeper of the Match

I have read many books focused on patient advocacy and one
of my favorites is “For the Love of Scott” by Jo Hamilton. She gave this book
to me a year before I painted her jacket story. I read the book and was amazed by all the subtle
foreshadowing of her life to come in the stories of her childhood. The tone of her book reminds me of the
Little House and the Prairie stories by Laura Ingalls Wilder. Her family story is warm and loving
though it depicts a tragedy.

I painted “The Keeper of the Match” for Jo to tell the story
of the love she has for her brother.

Jo grew up on a farm and was used to the reality of farm
life. When she was a girl she
loved a farm pig named Spot. She
would ride spot and talk to her.
Spot was a very smart pig.
One day she called for Spot and she did not come; Spot was gone. She asked her father what had happened. Her father told her Spot had “Gone to
market.” Jo did not question what
this meant and just accepted it as part of life on the farm. Jo also helped her father in the barn
by cleaning up 14 piglets newly birthed by a sow. She was only a little girl but was already becoming a
caregiver. So I painted a piglet
in the lower corner of the painting.

Jo’s youngest brother Scott was born in September of
1960. Although Jo had hoped for a
sister, she fell in love quickly with her little brother. She would rock him endlessly and was so
happy when they found a milk substitute for him made from soybeans. Scott was allergic to milk and the
soybean formula saved his life. So
I painted soybeans in the top panels of the painting.

As many children are wont to do Jo and her brothers played
with fire as youngsters. Jo and
her older brother Denny were considered responsible enough to light matches and
burn trash. They were still
children though, and decided to try to mimic adult smokers by smoking
cornhusks. As Jo tried to inhale
the burning cornhusk, a breeze came up and roasted her hair and eyebrows. Her little brothers watched with
horrified awe. Jo knew she had to be
a good influence for her little brothers, as she was the keeper of the matches.

As Scott grew he became an avid baseball player. Jo was able to attend many of his games
when she was an adult and Scott was in high school. Scott was so good that he went to college on a baseball
scholarship and was eyeing the minor leagues.

In August of 1983, Scott began complaining about back
pain. He went to the doctor. The doctor was concerned as he found a
lump in Scott’s groin. Scott
had testicular cancer. Scott had
surgery and went on the have aggressive chemotherapy. Due to Scott’s great physical shape prior to illness
he was tolerating the chemo series fairly well. By the third session a CAT scan revealed that his abdominal
tumor was gone.

Scott did not want to complete his fourth and final round of
chemo. The family was not sure it
was necessary. The doctors
pressured him to continue. Jo
counseled Scott with, “It’s only five more days of chemo.” But she told him that the choice was
his.

Scott began his final round. This session was excruciatingly painful. Scott felt like his veins were burning
up. Scott was given a Cisplatin overdose. He had been given 3 times the daily
dose for five days due to a mixing error.
No one ever checked the labels on the bags. So I painted the provider with his hands behind his back.

One of the last rational things Scott would ever say during
his very painful death was to his sister Jo. “Jo you have to tell people what they have done to me,
you have to tell them!” Scott
began hemorrhaging throughout his body.
He was given paralyzing medication to keep him still. The family stayed
by his side throughout the onerous ordeal. He struggled on eventually receiving 74 pints of blood.

In late December Scott seemed to be recovering, he was going
to be taken off the ventilator. A nurse determined there was a hole in the PEEP
tubing, which compromised his oxygen level. After suffering a massive overdose Scott died from another
preventable error.

So this is Scott’s story and it still burns. This is the story that Jo is still
telling three decades later. She
will never stop telling it because Jo is the keeper of the match.

3 comments:

Regina-Thank you so much for taking the time out of your jam packed schedule to write and include Scott's story in your blog. I have printed it out and will give my parents a copy when I show them Scott's jacket. They will cry and be very grateful to you. I add my voice to the choir of other "Walking Gallery" members in gratitude to you for telling ALL our stories all over the world. I know my brother Scott, helped guide me to you. He knew exactly how his message would be shared and carried around the world to an even larger medium. He knew you long before I did and now you have become part of the fabric that makes all of us "Keepers of the Match".

Thank you, Regina. Jo, her brother, sister-in-law, and I (Jo's publisher) met you at the DC premiere of the TMIT movie. Your portrayal of Jo's story about Scott was masterfully done. I know your Gallery touches someone every day.

If only my story could fit on a jacket! Blessings to you and the impact your story and Jo's has on others.

The Walking Gallery Mini Doc

About Me

Regina Holliday is a resident of Grantsville, Maryland. She serves on the board of the local non-profit The Highland Thrift Shop. She is a member of the Grantsville Rotary Club. She is also Asst. Cubmaster of Pack 460 Cub Scouts.

In addition, Regina serves as a parent advisor to the Garrett County School Board Health Advisory Committee. She is also a member of the Garrett County Chamber of Commerce and The Garrett County Arts Council.

Ms. Holliday is an activist, artist, speaker and author. You might see her at a health conference painting the content she hears from the patient view. She is part the movement known as participatory medicine. She and others in this movement believe that the patient is a partner with their provider and both should work together as a team.

Regina is a mother and a widow; she speaks about the benefits of health information technology and timely data access for patients due to her family loss. In 2009, she painted a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her late husband Frederick Allen Holliday II and his struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. Her paintings became part of the national debate on health care reform and helped guide public policy.

She also began an advocacy movement called “The Walking Gallery.” The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits. Paint and patients, pills and policy all come together within The Walking Gallery of Healthcare. This "walking wall" of 330+ individuals who wear personal patient narrative paintings on their backs is changing minds and opening hearts. They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. They are providing a patient voice, and by doing so, are changing the conversation.

She published a book with the Health Informatics Society of Australia (HISA) entitled: "The Walking Wall: 73 Cents to the Walking Gallery."